Month: January, 2013

It never ceases to be an adventure. I had a 9:30 a.m. appointment at the hospital on Monday. I got there before 7:00 a.m. to ensure I would have a parking place. It was cold and rainy–one of those days when the concrete does not just seem wet. It seems to sweat the moisture. I sat in the front seat and waited for the time when the elevators would be unlocked. It was cold enough that I wanted to wear my coat indoors, but I ended up leaving it in the car. It does not feel good to get cold, but it feels worse to sit for hours in a coat once you warm up.

Once inside I went to Clinic H (Oncology Department) and waited for a while. The receptionists do not appreciate it if you check in more than an hour before your appointment. I took a seat in what seems like an airport waiting area. I had a set of student papers to grade while I waited. The usual crowd assembled. I have never been waiting when it appeared that I might have the worst case. On Monday I observed several wraiths wearing hospital masks. Chemotherapy lowers your white blood cell count to the point that you are susceptible to every form of infection. One man coughed incessantly. You could feel the reverberation of others’ fear each time he did. No one wants to become ill. Surviving cancer is difficult enough. Dying of pneumonia or some other opportunistic disease after undergoing such awful treatments would be cruelly ironic.

There were more African-American men waiting than I usually see. They were stoic in a manner few else can achieve. They did not react to the coughing. They did not suck on water bottles or hold their heads as if they pounded. There was no low buzz of chatter from them. They had not brought their wives or daughters. They dressed in grays and blacks and faded denim. They cupped their own elbows as if their limbs ached, but there were no loud sighs. The painful silences speak so loudly to me now. I can tell when the muscles in their necks are taut from the effort of holding up a painful head. One man’s nostrils flared for nearly an hour. He appeared to be in extraordinary pain each time he drew breath. When the receptionist called his name, then changed her mind and asked him to retake his seat he walked back from the front desk like he could feel every hair remaining on his rapidly emerging scalp. No complaints despite his visible suffering.

Actually, no one complained as we waited and waited and waited. It was about five and a half hours that I waited. I saw countless people come and go.

One man came in his pajamas with six or seven people in tow. When his name was called, all of them rose to lead him toward the desk. There were several young men in the group. When the nurse asked if one of them would translate for him, they all raised their hands. In the end, one man, a son, I think, escorted his dad back to the examining room. Everyone else waved as if he might not return. They hovered in a corner to wait for him to return.

Only one woman wore a wig on Monday. The rest of the women had some hair or little knit caps. One woman had a fresh tuft of silvery hair atop her head and nothing else. She wore dark clothes and a leather bomber jacket. She knew many of the other women who waited. Barely into recovery herself, the woman went from patient to patient offering others comfort. “You look wonderful,” she would say. When a receptionist asked for her appointment sheet she said very softly, “My doctor called and told me to come in. I think she has bad news for me.”

I choked back emotion at her bravery. I hoped it was going to be good news or bad news tempered with hope. She seemed like such a nice person. You don’t wish cancer on a nasty person, but it hurts to see so many ordinary heroes and heroines. When she raised her hand to wave to a passing nurse I saw the large flat fingernails on her hands. I could not help but think of my old cancer buddy Country Joe. He told me those flat fingernails were a sign of lung cancer.

A nurse took my vitals three or four times. She kept forgetting to write things down. She coughed a few times in my face. I did my best not to flinch. She apologized and promptly coughed again. I prayed that she was not sick and would not make me sick. When she was not watching I smeared hand sanitizer on my cheeks.

Eventually I saw the doctor who now assists Dr. H. She always wears her name tag in a pocket so I still don’t know her name. She claimed to have called me twice and asked if I had gone to the restroom. “No,” I answered. “I have been here the entire time.”

She asked me how I was doing and I told her that I had a new rash all over my shins, my legs and chest. She had me roll up my pants legs. She checked my stomach–no rash there. Dr. H came into the room and they called Dr. Z in, too. All three studied the rash and Dr. H scolded me for not calling her when it started. I did not defend myself. But I was amused at the idea. My appointment was changed without notice to me. I just got a letter in the mail. Don’t come 1/23. Come 1/28. Days are fungible at the county hospital. No one calls me.

The doctors described my rash as pitikia or petechiae. I think the word(s) mean(s) “rash.” But I came to understand that it could mean serious concerns. They called the pharmacist to ask why my prescription was changed from one color of pill to another–a different manufacturer. I used to take a dark blue pill. Now the pill is white.

I will go back to taking the dark blue pill as soon as the hospital’s pharmacy can prepare a new prescription–five or so business days from whenever I drop off the new prescription.

Petechiae is like my blood platelets are “committing suicide.” I not only have red marks all over. Some are joining into big red patches. As this happens the blood leaks out of my veins like bruises. When I mentioned all of this later to my friend Mary she thought of the petechiae discussed on NCIS. Apparently one finds it on the necks of strangulation victims.

The doctors eventually sent me for blood tests. Dr. H told me to call her Tuesday for results. She also said she would get me a referral to a gynecologist who will examine me for signs of cancer.

By the time I had my blood drawn I had been at the hospital for seven and a half hours. I waited quite some time for the blood test because the person who takes blood was on lunch break and no one fills in during his absence. The coughing man and a whisker-thin Hispanic gentleman and I waited for his return while the TV blared on with Anderson Cooper and Emmit Smith removing white stains from wooden tables. I still had to go to work after all this. As a result, I never made it to the pharmacy to drop off my prescription. I never made it to the Carelink office to apply for renewal of my charity status.

I called Dr. H today but she had not been at work and did not have my test results. Maybe tomorrow.

I made it to school at 3 p.m. for my office hours. I finished teaching a class Monday night. I probably graded twenty papers that day. When I got home I realized that I had eaten a protein bar, eaten a piece of string cheese, consumed two sodas, and swallowed a handful of pills and vitamins–what a day! I had to rush home to prepare for a brand new class I started teaching this morning at a different school. I had three resumes to review and fix for students for a resume workshop at school today. There was no time to eat dinner. There was no time to worry about my health.

I crawled into bed at midnight and set an alarm for five in the morning. The truth is that this is what passes for ordinary in my life now. I keep trying to simplify my life and it grows more complicated. I wanted to hear that cancer has not returned, but we somehow got distracted by new complaints that started out as rashes and became suicidal platelets. I got up early and did whatever I could to get in and out from my doctor’s appointment only to spend an entire day waiting to see, to be seen, to hear, and to be heard. I rushed to finish classes and rushed to start them. I pass by sick people every day who come and go as well. I find myself thinking quite a bit about those people because much of the rest of what is happening is just a muddle. What is happening to people all around me is so much more terrible to imagine, much less contemplate.

Life goes on even when it does not. Tonight as I set my alarm again for five in the morning I wonder if the muddle isn’t what saves me from getting lost in the fear that could so easily stop me in my tracks. I know at moments like this that, no matter how muddled life is, it is better than giving in or giving up. So here we go again.

Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take. Amen.

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My next doctor’s appointment is tomorrow morning at 9:30 a.m. I originally had an appointment for last Wednesday, but the hospital recently sent me a letter to inform me that my appointment was changed to another day of the hospital’s choosing. This is what happens when you take treatment at the county hospital. No one calls to inquire about your availability.

After all of the angst involved in making my October appointment, I am just relieved not to have a conflict with my teaching schedule. I am teaching Tuesday and Thursday mornings this semester. I wanted to avoid a Monday or a Wednesday conflict, and who can blame me?

Much and little has changed since October. My chief physical complaint remains my seriously burned bladder. The radiation’s effects on my bladder continue. It was about a week ago that the pain was so bad that I had to grip my knees to keep from screaming. The pain ran from my bladder to the tips of my toes. Most days I do not think much about the pain. It has become such a part of my day that it has to get pretty bad to be noteworthy. I stopped recording pain levels for each trip to the bathroom right before Christmas. Nothing much changed from day-to-day or month-to-month. I decided that it might improve my outlook if I stopped recording the pain and tried accepting that change was not imminent or even likely.

I think the change had some positive effects. I hardly speak of the pain now that I no longer track it. It has not altered the pain to ignore its constancy. But I am fairly certain that by speaking of it less I have been better company to friends and family. Like me, they must have found it difficult to discuss a problem that does not go away and has few prospects of doing so. I considered the hyperbaric chamber as a possible tool for repairing my bladder, but do not now have the time or inclination to go for hours of lying in some tube infusing my body with oxygen. I may feel differently in the summer when I teach fewer classes.

My bowel also suffered from five weeks of radiation. It is not the same. I take over-the-counter medicine every day to address the remaining effects. I can eat whatever I want, but I really don’t want to eat nuts now that I have undergone so much radiation. It can be a cause of discomfort rather than pain. I have stopped taking yogurt every day. I no longer take probiotic pills. I will just say that I am a different person inside.

For awhile I hated the way my own body smelled. I no longer find my own smell so unpleasant. I cannot say for sure whether anyone else has noticed a difference. No one else ever remarked on that smell of burnt flesh that seemed to hang around me.

My skin is no longer scarred by my external radiation burns. Instead, I am covered with a non-itchy, red rash that seems to be a side effect of my bladder medication since the manufacturer changed. I have the rash over most of my legs and torso, particularly the inside of my legs from ankles to thighs.

My skin was so dry after chemotherapy and radiation that I had calluses on the tops of my hands, but they have gone away.

My fingernails still have bubbles and odd ridges. My toenails have gone back to normal.

My hair has changed again in the last three months. It is not quite as thick and not quite as wavy. But it remains darker and more “silvery” than it ever was before. My eyebrows are thicker and longer. I have to trim them. I never did that before cancer. I have longer eyelashes than I ever had before, but no longer as many eyelashes as I had in October. I miss those eyelashes.

At work at DePaul’s law school, things have not improved. The law school has decided not to use for the LARC III class I have taught every fall and spring from Fall 2005-Spring 2012. Now I teach only Transactional Drafting. Last year the law school did not use me to teach that class. In the fall of 2012 I was asked to only teach it. And they paid me as much to teach it as they used to pay me to teach LARC III. This semester they cut my pay in half. I am told that the higher pay was the mistake. I do not really know what to believe. There are some investigations of this matter ongoing, but no resolution appears to be in sight.

I am not leaving because I make some people at the law school uncomfortable. They are not entitled to discriminate against me for having cancer or for asserting my rights to be free from discrimination for a disability. The result of all this is that things have not changed positively at the law school. In fact, my boss no longer seems to hold meetings of the drafting “professors.” I just started the spring semester last week. It was the first time that my boss did not call a meeting before classes started since I became an adjunct professor in 2005. In fact, last semester she omitted to tell me when she wanted to review my grades for my fall class. She only gave me a deadline for turning in my spring semester syllabus after I inquired about one. I do not know her motivation for holding no meetings since August as she only once considered holding a meeting since then and cancelled it, but I wonder whether she has decided not to even see me since she learned that I formally complained to the EEOC and the university about being terminated for having cancer.

I am putting off thinking and speaking about what really matters. I will be undergoing at least one test tomorrow to determine if cancer has returned. I am nervous about that. I do not think that it has returned. I think positively about this topic. Cancer has not returned. I am positive about that!

I did not know that I had it in the first place, so I should not expect to be able to discern it now; but positive attitude is an attitude and not a scientific condition.

I bought a lottery ticket this past week. The Powerball prize has surpassed $100 million. As I drove away from the 7Eleven I wanted to imagine winning the prize, but I encountered the external dimensions of my absolutely outrageous positive attitude about cancer.

I could not bring myself to articulate a wish for a winning ticket–not in words and not in thought. I got as far as “I wish . . . ” and was paralyzed. I could not complete the thought. I just kept thinking that I already was so incredibly “lucky” to be beating cancer that I shouldn’t want anything else. That’s silly, isn’t it? It is silly to think that if anything else fabulous were to happen to me that I might lose my life. It is like a superstition, except that my superstition is not that my favorite sports team will lose if I change my socks (I do not have a favorite sports team, so I can joke about that). I have this dreadful sense that I should not want for anything now, which makes the extension of my life silly, right? Seriously.

I have not seen the movie that is out about a family that survived the tsunami in Phuket. However, I saw on TV the author of the book on which the movie is based. She said that she and her family, having survived that cataclysmic tidal wave, have asked, “Why us?” If I recall correctly, her son asked, “What for?” Surviving can be the cause of guilt, can’t it? I have been so aware of the fact that so many people succumb to cancer that it sometimes overwhelms me.

That is a challenge, isn’t it? If you want to stop feeling so frightened of your own vulnerability to a return of cancer, then maybe you have to decide what to do with your new lease on life.

I have no answer yet to the question: “What for?”

I have been feeling so lucky to be alive that I have been keeping myself from moving on in any significant way.

I have faced so many fears in the past fifteen months. I am afraid to face my fear that I could jinx my own recovery by wanting anything else for myself. I will have to address that and put my positivity to new uses.

But, for tonight, as I face the prospect of seeing my doctor tomorrow, I am going to give myself a little more time to just feel so overwhelmingly lucky that I can express no other wants or desires. For tonight I just want to think that, notwithstanding uterine cancer, major surgery, five weeks of radiation, six weeks of chemotherapy, employment discrimination, and all the travails of slow, slow recovery, that I am so damned lucky to be alive that I don’t need anything else.

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As you know, I’m aggravated at the idea of people profiting from the suffering of people with breast cancer. I’m disappointed to learn that the pink ribbons and high fives from breast cancer charities do not reflect the fact that national research of metastatic breast cancer is a low priority. Here’s another excellent discussion of the issue by Yvonne.

Reposted from March 23, 2012 in support of increasing awareness and support for Metastatic Breast Cancer research. Please visit METAvivor to learn about “The Elephant in the Pink Room.”

Perhaps it is because my family history is bereft of breast cancer. Perhaps I was lulled into a false sense of security by three mammogram reports that lacked information about the density of my breasts. Whatever the reason, until my own diagnosis, I assumed that breast cancer was what happened to other women in other families. Such naïveté. Cancer always happens to people who are just like you and me. In fact, the Dr. Susan Love Research Foundation estimates that 70% of the women who have breast cancer, have what is known as a “sporadic occurrence” – no family history.

It is almost twelve months now since I heard the Breast Patient Navigator tell me, as if by rote, but not unkindly, about…

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The “pinkwashing” of the breast cancer research cause is outrageous. This blog helps explain how painful it is to breast cancer survivors to have their condition trivialized by companies that use others’ suffering to promote their merchandise and who do not help the effort to find a cure. Pass on the word–no more pink posers–make direct contributions to charities that make a difference!

***10/9/2013: I have been completely overwhelmed by the number of visitors this post has received in the past few days (over 130,000 at last count!). I am not sure who first shared it — or who continues to share it — but I want to THANK YOU all for visiting, reading, and sharing it. I think the realities of breast cancer are so often trivialized and “pinkified” so I am sincerely grateful to everyone who has taken the time to read or share my blog. I am sorry to say that my story is just one of many, but with your help, we may just be able to do something to change that. Please feel free to leave me a comment or to share your own story below — or send an email: cancerinmythirties@yahoo.com. Thank you all. ***

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As my readers know, I have family (Aunt Arlene) and friends (Joyce) who are dealing with breast cancer. I also have numerous online friends whose blogs I read who are dealing with breast cancer every day. And I’ve lost people who I care about this year due to breast cancer. You may not know that many of the “pink ribbon” activities you see in the media do little for finding a cure and that, even when they are committed to curing breast cancer, they largely or entirely ignore the plight of women with metastatic breast cancer. Those are the women who die of breast cancer after long and painful battles to extend their lives. We have no cures for them and few in the “works.” So it makes them and should make the rest of us mad when people pretend they are raising money for the cause and when they pretend a cure is in sight. Read Lori’s blog to learn what you can do to help! And please help. Send a link to a friend and ask him or her to read, too. Folks, anything worth doing is worth getting the “village” involved.